Ever since I was a little girl I felt deep within my soul that I wanted to be a mom. Every play time revolved around this desire, so I often found myself playing Barbie’s and constructing perfectly formed families with a mom, dad and babies. I remember my sister and I would always fight over the cute baby. If I wasn’t playing Barbie’s, then I was playing house, cradling dolls in my arms or dressing them up in some of my sister’s old baby clothes. And when I wasn’t doing either of those things, I was daydreaming of the day I would have my own little baby to take care of. I even remember what names I wanted my future kids to have. It has always been the one dream I have never let go off, and its proving to be the one dream that is the most difficult to achieve.
As a teenager, when I got my period it quickly became obvious to me that there was something wrong. I distinctly remember that in the weeks leading up to my very first period really odd things happened. One thing in particular happened about a week or two before. My back was in a lot of pain, for no discernible reason. It was so bad, I had to skip church and I stayed in bed all day, as my mother and grandmother did everything they could to ease the pain. And then, just as suddenly as it came on, it went way. When I started, my mom talked to me and explained how my period would be about three days long and it wouldn’t be a lot of bleeding. But she was wrong. From the very beginning, my periods were always a minimum of six days, and they were always very heavy. Even though I suspected that something must be so wrong with me, I didn’t say anything to my mom or anyone else because I figured maybe this was just the way it was supposed to be. That is, until the pain started.
All through high school I struggled with horribly intense period cramps. The worst part was, my mom would insist that it was normal to have period cramps and that I needed to stop being so overdramatic. But the pain was so intense, on more than one occasion I ended up vomiting all over myself from the pain. I would beg her to let me stay home from school or church and she would tell me that every other woman has pain and they still go on about their daily lives, so I should too. It wasn’t until I was on my second year of college, and one day I was on my way to class and I started feeling some cramps, so I popped a couple of Tylenol and went on my way. As I waited for class to start, the cramps started to intensify, so I took another Tylenol. It didn’t help. I left campus and called my mom to tell her I was going home because I was in too much pain. She was mad, but at that rate I couldn’t care. I need to lie down and try to sleep the pain off. About halfway home I realized I wasn’t going to make it. The pain was too strong and I was feeling nauseated. I called my mom and asked her to come get me from McDonalds because I didn’t think I could finish driving myself home. I pulled into the McDonalds parking lot and went to lie down in the backseat until my mom came. Then I vomited out the side of the car. When my mom finally got there she realized that I wasn’t faking it, and she took me to my GP. He gave me a shot and then prescribed me some strong ibuprofen pills, which he continued to refill for the next several years. It was a God send, because I was finally able to manage my pain better and incidents like this one became much more infrequent.
I have a fascination with medical shows (real life ones, not Gray’s Anatomy stuff), and of course, some of my favorites were the ones that dealt with pregnancy. At this point, even despite the painful and heavy periods, my dream of being a mom didn’t waiver. If anything it became stronger, because it was my hope that once I got pregnant, my periods would get better. So of course, I watched these shows and learnt a lot in the process, so it was no surprise that at an early age (I think I was about 17) I heard about endometriosis for the very first time. The main show where I learnt this from was the show “I didn’t know I was pregnant”. I remember women talking about how their whole lives the doctors had told them they would never be able to conceive, and then they would go into detail about what they went through before their doctors came to the diagnosis of endometriosis. And everything they said resonated with me. The heavy, painful period, the long menstrual cycles, it all started to make sense to me. It was then that I knew deep down, without having a doctor officially diagnose me, that I had endometriosis. Coming to the realization that what I was dealing with was probably endometriosis was not as difficult as one would think. Remember I was watching a show about pregnant women, so while the doctors on the show explained that the chances that a woman with endometriosis could get pregnant naturally were slim, I was watching women with the disease getting pregnant and giving birth. It gave me hope that not all was lost for me yet. I could still achieve my dream of one day having a baby.
About a year into our marriage, my husband and I decided to stop preventing pregnancy. By this point my periods had become more manageable, the pain wasn’t as intense (probably because I got better at managing it) and my periods were still 7 days long, but they weren’t as heavy as they used to. Based on this alone, I figured maybe there was a chance I didn’t have endometriosis and that maybe it wouldn’t be too difficult for me to get pregnant. Even though we weren’t officially trying yet, in the entire 9 months that we stopped preventing, I didn’t get pregnant once. Not even a scare, my period still came on like clockwork. On the day we moved into our condo we both agreed it was time to start trying, and so we did. The first year of trying was sad, but I was still holding on to hope, because everything online said I shouldn’t worry unless we reach 12 months and there is no pregnancy yet. Then the official one year mark came and went, and we still had absolutely nothing.
That November I saw my OBGYN for my annual physical and to talk to him about our plans. He ran tests and then told me that I should get an HSG as well to check my tubes and uterus. Reading about the HSG was really scary, but once again, I was convinced that everything would be fine and it would all be OK and maybe all we needed was a little push. I had my HSG done in December and had to wait until January to see my doctor again and get my results. Honestly, I am pretty happy I didn’t get my results before the holidays, because I would’ve been too heartbroken because the news to come from the HSG were not great. While my uterus looked awesome, there was no spill out of my left tube. At all. My OB took me into his office and explained that more than likely there were adhesions over the tube, blocking the eggs from getting in the tube. “But don’t worry because your right tube is fine, and you only really need one good tube”, he said as he handed me the diagram he put together. He then printed out a fact sheet about Clomid and told me he wanted me to start taking it. While ovulating has never been an issue for me, he told me that Clomid would help give us our best chance by giving us more, better quality, eggs. I took the sheet and asked him if he felt that maybe endometriosis could be the problem with my tube. He said the only way for us to know is by doing surgery, but that he wanted me to try Clomid for six cycles first and then do the surgery. So I followed up and asked him “if I do have endometriosis, I can still get pregnant right?” He got serious and said “not always.” I think that was the first moment where I felt like I was starting to lose hope, and also I lost a little bit of faith in him helping me get pregnant.
We did four rounds of Clomid. I responded to the medication every cycle (except for one in which I was taking strong antibiotics for a respiratory infection), but I didn’t get pregnant. Not even once. After the fourth failed cycle, I had had enough and knew this wasn’t going to work. I did some research for a fertility doctor in my country, wondering if I would even find one. Then a co-worker mentioned that she knew of one and gave me his name. I searched him and realized that he was the only one in my country who even did IVF (he doesn’t anymore though). I called my OB and asked him what his thoughts were on this doctor and he said he was a good choice. As soon as I hung up from my OB I called the doctor to make my first appointment with the new doctor.
This doctor was thorough with his testing and he asked me to do an ultrasound. During my ultrasound he mentioned to us that he could see signs of adhesions in both tubes, and there was definitely evidence that endometriosis was a serious possibility. He encouraged us to still keep trying, but that when my next cycle starts I should call him so they could schedule a laparoscopy to diagnose endometriosis and figure out what the blockage in my left tube was. I had my surgery on June 12th, 2018. I went into surgery feeling happy and hopeful, but mostly hopeful that once again the doctor would be wrong and there would be no endometriosis and everything would be perfect, and he would tell us everything was clean and we could get right to trying again. When I woke up from surgery, I woke up to the news that I did have endometriosis in several spots of my reproductive system, I had adhesions all throughout my tubes and that the blockage of my left tube wasn’t even really a blockage at all. My tube had become twisted from the tight adhesions that had formed a ring around it. This was devastating news, but he assured my husband and that all was fixed and he preserved both ovaries.
The first few weeks after surgery were rough. I was filled with intense anxiety and worry and fear. All I could think of was how far away my dream felt, especially since the doctor had put me on three months of birth control pills, so there was no way pregnancy was going to happen until September at the earliest. Slowly though, I was able to get better and work through my pain. I counted down the days until I would be able to resume fertility treatments. This time we were going to try Femara with a trigger shot and I couldn’t wait. Both my husband and I were convinced that the surgery was the answer to our prayers and thought that maybe we wouldn’t even need treatment, and we would just end up getting pregnant naturally right before.
Finally CD1 of my first birth-control free cycle came. My doctor asked me to repeat the HSG, and the results came back normal, my uterus looked fine and there was a spill on both sides, which meant both tubes were clear. Finally hope was taking hold again. When I went back to my doctor he even found a nice little follicle growing on my right side. He encouraged us to go ahead and keep trying, but to not fear and we would start medication when my next cycle began. That cycle was much different than cycles I had before. For one, it was practically painless, which was something I had never experienced before without the help of painkillers. Also, my luteal phase extended all the way to 11 days, which was a welcome surprise since I usually start spotting by 8 DPO. I didn’t get pregnant, but I was so excited that things were looking up.
Last week I started Femara. I was excited and happy, even despite the price tag. At baseline my lining looked good, but the hope was short-lived. During my baseline scan he found a Para ovarian cyst on my right side. It was at that moment I knew this cycle would probably not be the one. He then said that I need to do a blood test to see if the cyst was estrogen producing, and if it was, then we would have to cancel this cycle and I would need to take birth control to suppress it. The next few hours as I waited for my results were absolute torture. I couldn’t concentrate and I was desperate to hear back. Finally my results came back low, so my doctor gave me the go ahead to start the Femara. Deep in my heart, I already knew this was going to be a failed cycle, but I was able to talk myself up with the help of my therapist and said to myself that at least this cycle could be seen as a learning experience to make next cycle better and a success.
When I went back to see my doctor on CD10, I went in there figuring that I would not get the news I wanted, but that it would be OK and I would be OK. And I was so wrong. My scan revealed that my lining had barely grown since baseline (so not thick enough) and neither of my ovaries had evidence of developing follicles. My doctor then told me that it didn’t look like I was responding to the Femara and said that we may have to consider Menopur instead. It was like the rug was pulled out from under me. The news sent me spiraling because now even my ability to ovulate was coming into question, despite the fact that I always ovulated on my own and I had responded so well to Clomid in the past. Although I went in prepared, the blow hit me too deep. I could feel my dream slipping through my fingers, and it just feels so far away now.
I am due to see him again next week Tuesday, to see if there is any improvement to my follicle growth. I don’t think anything major much will happen at this point. My heart broke so hard last night as I figured that maybe we are fighting a losing battle. As I lay in bed, I clung to a pillow sobbing and praying to God that He would please give me peace while I wait on His timing, to remove my pain and most importantly, to send me a sign that lets me know that this is not how my story ends. I begged that He would let me know that my baby is coming, that I WILL get pregnant.
Today I am doing a little better. As I wrote this I found it cathartic to release my emotions and pain about our journey. It also helped to have a supportive co-worker whom I felt comfortable talking to hear me out and allow me to let go of the tension I have been feeling. I can’t focus on work today, unfortunately I am too consumed. But I am slowly getting up off the floor and dusting myself off and realizing I still have options and not all is lost. God and the universe are watching over us, and I know that God would have not placed this strong desire to be a mother in my heart, if He wasn’t going to provide me with the baby to mother. I’ve said it before; this is the most difficult journey I have ever had to go through in my entire life. My nearly life-long knowledge that endometriosis was a part of me still didn’t prepare me nearly enough to face the reality of infertility. I watch friends and family get pregnant with ease and have happy healthy babies, and it breaks my heart every time. But I fight not to let it deprive me of joy and I throw myself into situations the way I would if infertility was not a part of my life. Is it easy? Of course not, but some days are better than others. And I realize that if I shelter myself, I will never allow myself to heal and I will miss out on a lot that I may regret. There is the chance I will only be able to experience motherhood by vicariously living through my friends and family. I don’t want to end up in a place where I wish I had taken the time to be a good Auntie, but instead I allowed the darkness to keep me away. I still dream of my one-day baby and while it is still unclear what it is going to take to get me there; I am not ready to give up, even if I feel like it sometimes. This is not the way I pictured my journey to motherhood would be like, but it is my story and this is not the end.
If you would like to follow Dianna’s story, you can follow her on Instagram @My_Confused_Stork